Advance care planning

Advance care planning is a process that enables individuals to make plans about their future health care. Advance care plans provide direction to healthcare professionals when a person is not in a position to make and/or communicate their own healthcare choices. Advance care planning is applicable to adults at all stages of life.[1] Participation in advance care planning has been shown to reduce stress and anxiety for patients and their families, and lead to improvements in end of life care.[2] Older adults are more directly concerned as they may experiment a situation where advance care planning can be useful. However, a minority use them. A research conducted in Switzerland with people aged 71 to 80 showed that better knowledge on advance care planning dispositions could improve the perception older people have of them. Communication on dispositions should take into account individual knowledge levels and address commonly enunciated barriers that seem to diminish with increased knowledge.[3]

The main components of advance care planning include the nomination of a substitute decision maker, and the completion of an advance care directive.

Background

Advance care planning is applicable to all adults in all stages of life.[1] Advance care planning aims to allow people to live well, and when death approaches, die in accordance with their personal values.[4] Advance care planning is only applicable when the individual cannot make and/or communicate decisions about what they want in relation to their healthcare.[5] If advance care planning has occurred, patients who have lost capacity or the ability to communicate or both, are able to continue to have a say in their medical care.[6] This has been shown to improve end of life care, and provide improved outcomes for both patients and their surviving relatives.[2]

While applicable to all stages of life, it is particularly applicable to end-of-life care decision making, since approximately 1 in 4 people lose decision making capacity when approaching the end of their life.[7]

Federal and state legislation in the US,[8] Australia,[9] Canada[10] and the UK [11] supports the right of patients to refuse unwanted medical treatments. People can also express their preferences through written advance directives or by advising their appointed substitute decision maker about their wishes for when they are unable to make or communicate these decisions/wishes themselves.

Components

There are two methods by which the communication of an individual's preferences can be known. These are:

  1. the appointment of a substitute decision maker, and
  2. the completion of an advance care directive or similar document.

Substitute decision maker

A substitute decision maker makes decisions on behalf of an individual only when that individual does not have the capacity to make/communicate decisions for themselves.[12]

There are a number of methods by which a substitute decision maker can be identified. The ideal method is the appointment of a person using a statutory document. In the absence of a statutory document the substitute decision maker may be a "person responsible" as listed in order of authority in legislation.[12]

A substitute decision maker can be chosen by an individual following completion of relevant paperwork, can be assigned to the person by law in the absence of a chosen substitute decision maker (e.g. family member or carer), or can be appointed for the person (e.g. guardian appointed by a guardianship tribunal) .[13]

Substitute decision makers make decisions based on the principles of either substituted judgement or best interests.[1] Substituted judgement is when the substitute decision maker arrives at a decision based on the best approximation of what they believe the person would want. This decision should be informed by both the known wishes of the person and the best available healthcare advice.[14] Best interests decision making requires the substitute decision maker to focus on the patient's best interests.

Many, but not all, jurisdictions have legislation supporting the appointment of a substitute decision maker through a statutory document. They have different names depending on the jurisdiction:

JurisdictionSubstitute Decision Maker Type
AustraliaAustralian Capital TerritoryEnduring Power of Attorney [15]
New South WalesEnduring Guardian [16]
Northern TerritoryN/A
QueenslandEnduring Power of Attorney [17]
South AustraliaMedical Power of Attorney [18]
TasmaniaEnduring Guardian [19]
VictoriaMedical Enduring Power of Attorney [20]
Western AustraliaEnduring Power of Guardianship [21]
United KingdomLasting power of attorney - health and welfare [22]
United StatesHealth care proxy
CanadaNewfoundland and LabradorSubstitute decision maker [23]
Nova ScotiaDelegate Decision maker [24]
New BrunswickPower of Attorney for personal care [25]
Prince Edward IslandHealth Care Proxy [26]
QuebecMandatary [27]
OntarioPower of Attorney for Personal Care [28]
ManitobaHealth Care Proxy [29]
SaskatchewanHealth Care Proxy [30]
AlbertaHealthcare Agent [31]
British ColumbiaTemporary Substitute Decision Maker [32]
Yukon TerritoryHealth Care Proxy [33]
Northwest TerritoriesHealth Care Agent [34]
NunavutN/A

Advance care directives
Main article: Advance health care directive

An advance care directive is a document detailing an individual's health care preferences. This may include personal values and life goals, describe circumstances the person would find unacceptable, identify preferences relating to specific medical interventions, or a combination of these.[1]

Advance care directives may be written on specifically designed forms, but can also take the form of a written letter or statement.[35] Inclusion of a doctor in the completion of an advance care directive will assist in ensuring that an individual's wishes are clear and written in a manner that is easy for substitute decision makers and/or medical staff to interpret and follow them in the future. Having a physician witness the document will reinforce this by showing future medical staff that the document contains information about informed decisions due to the assistance of a physician.[36]

References
  1. "A National Framework for Advance Care Directives" (PDF). Australian Health Ministers' Advisory Council. September 2011. Archived from the original (PDF) on 26 January 2014. Retrieved 17 December 2013.
  2. Detering, KM; Hancock, AD; Reade, MC; Silvester, W (2010). "The impact of advance care planning on end of life care in elderly patients: randomised controlled trial". BMJ. BMJ Publishing Group Ltd. 340: c1345. doi:10.1136/bmj.c1345. PMC 2844949. PMID 20332506.
  3. Cattagni Kleiner, Anne; Santos-Eggimann, Brigitte; Fustinoni, Sarah; Dürst, Anne-Véronique; Haunreiter, Katja; Rubli-Truchard, Eve; Seematter-Bagnoud, Laurence (December 2019). "Advance care planning dispositions: the relationship between knowledge and perception". BMC Geriatrics. 19 (1). doi:10.1186/s12877-019-1113-3. ISSN 1471-2318. PMC 6480869. PMID 31014271.
  4. "Respecting Patient Choices". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 18 December 2013.
  5. "Competence and Capacity". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 18 December 2013.
  6. "The benefits of advance care planning". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 16 December 2013.
  7. Silveira, MJ; Kim, SY; Langa, KM (2010). "Advance directives and outcomes of surrogate decision making before death". New England Journal of Medicine. Massachusetts Medical Society. 362 (13): 1211–8. doi:10.1056/NEJMsa0907901. PMC 2880881. PMID 20357283.
  8. Winzelberg, GS; Hanson, LC; Tulsky, JA (2005). "Beyond Autonomy: Diversifying end-of-life decision making approaches to serve patients and families". Journal of the American Geriatrics Society. American Geriatrics Society. 53 (6): 1046–50. doi:10.1111/j.1532-5415.2005.53317.x. PMID 15935032.
  9. Cartwright, CM; Parker, MH (2004). "Advance care planning and end of life decision making". Australian Family Physician. Royal Australian College of General Practitioners. 33 (10): 815–9. PMID 15532156.
  10. "Your rights and choices as a patient". Dying with Dignity. 2011. Archived from the original on 11 October 2014. Retrieved 9 October 2014.
  11. Mullick, A; Martin, J; Sallnow, L (2013). "An introduction to advance care planning in practice". BMJ. BMJ Publishing Group Ltd. 347: f6064. doi:10.1136/bmj.f6064. PMID 24144870.
  12. "Choosing someone to speak for you". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 18 December 2013.
  13. "Substitute Decision Maker". Advance Care Planning Australia. Archived from the original on 2014-01-26. Retrieved 18 December 2013.
  14. "Substitute Decision-Makers: End-of-Life Decision-Making when the Patient is Incapable". Caring to the end of life - Princess Margaret Hospital University Health Network. Archived from the original on 2014-07-26. Retrieved 16 December 2013.
  15. "Enduring Power of Attorney". Public Advocate of the ACT. 20 July 2011. Retrieved 17 December 2013.
  16. "Enduring Guardianship". New South Wales Government, Guardian Tribunal. 7 August 2012. Retrieved 17 December 2013.
  17. "Enduring Power of Attorney". Queensland Government. 22 February 2013. Retrieved 17 December 2013.
  18. "Medical Power of Attorney and Anticipatory Direction". Government of South Australia, SA Health. 12 October 2013. Retrieved 17 December 2013.
  19. "Enduring guardianship". Tasmanian Government, Guardianship and Administration Board. 30 July 2013. Retrieved 17 December 2013.
  20. "Enduring Power of Attorney (Medical Treatment)" (PDF). Office of the public advocate. Archived from the original (PDF) on 26 January 2014. Retrieved 17 December 2013.
  21. "Enduring Power of Giardianship (EPG)". Government of Western Australia, Office of the Public Advocate. Retrieved 18 December 2013.
  22. "Lasting power of attorney". GOV.UK. 8 November 2013. Retrieved 17 December 2013.
  23. "It's your decision: how to make an advance health care directive" (PDF). NF&L Government, Department of Health and Community Services and Department of Justice. Archived from the original (PDF) on 18 April 2013. Retrieved 9 Oct 2014.
  24. "Personal directives in Nova Scotia" (PDF). novascotia.ca. Retrieved 9 Oct 2014.
  25. "Wills and estate planning". Public Legal education and information service of New Brunswick. Retrieved 9 Oct 2014.
  26. "Health Care Directives" (PDF). Community legal information association of PEI. Retrieved 9 Oct 2014.
  27. "My mandate in case of incapacity". Curateur Public Quebec. Retrieved 9 Oct 2014.
  28. "Power of Attorney for Personal Care". Community Legal Education Ontario. Retrieved 9 Oct 2014.
  29. "Health Care Directive". gov.mb.ca. Retrieved 9 Oct 2014.
  30. "The Health Care Directives and Substitute Health Care Decision Makers Act". justice.gov.sk.ca. Archived from the original on 2014-10-15. Retrieved 9 Oct 2014.
  31. "Understanding Personal Directives" (PDF). Government of Alberta. Retrieved 9 Oct 2014.
  32. "HEALTH CARE (CONSENT) AND CARE FACILITY (ADMISSION) ACT". BC laws.ca. Retrieved 9 Oct 2014.
  33. "Advance Directives". Yukon Health Guide. Archived from the original on 2013-05-19. Retrieved 9 Oct 2014.
  34. "Personal Directives" (PDF). NWT Health and Social services. Archived from the original (PDF) on 15 October 2014. Retrieved 9 Oct 2014.
  35. "Advance Care Planning". NSW Office for Ageing, NSW Trustee and Guardian and NSW Public Guardian. Archived from the original on 15 December 2013. Retrieved 18 December 2013.
  36. "Writing down your wishes". Advance Care Planning Australia. Archived from the original on 26 January 2014. Retrieved 18 December 2013.
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